Social Media Health Information Formats and Endometriosis Treatment-Seeking Intentions: A Randomized Controlled Trial

Background Design

Conclusions Highlights

Study Design Participants and Recruitment Randomization and Allocation Concealment Intervention Procedure | Imagine that for the past 12 mo, you have had very painful periods. Sometimes, the pain is so intense that you have to call in sick to work. You also feel pain when you go to the bathroom and during sex. Worried that this is not normal, you make a visit to see your GP. After checking your symptoms and medical history, the doctor suggests you may have endometriosis. This is where uterine tissue grows outside of the womb. They explain that symptoms vary from person to person. You get an ultrasound scan, but the results are unclear. To help with your pain, the doctor suggests taking pain medicine. They also offer to refer you to a gynecologist, a doctor who specializes in a procedure called laparoscopy. The doctor explains this would involve having a general anesthetic (putting you to sleep) while a small cut is made in your stomach. The surgeon would then use a tiny camera to look for excess uterine tissue growing outside of the womb. If found, they will treat it by removing the tissue and send off a sample to confirm the diagnosis. They say that although this is the only way to diagnose endometriosis, the excess tissue can grow back. Also, improvement in pain may be only short-term. They also warn that long wait times are common, and it can cost between $500 and $4,000. Your doctor then asks, would you like to be referred to a gynecologist for laparoscopy? | | Before you leave the appointment, the general practitioner remembers there are new guidelines on endometriosis. After reading the new guidelines, she says that laparoscopy is now recommended in only patients in whom pain medicine or hormonal treatment don’t work. She also said there is no evidence that an early diagnosis is better than a late diagnosis in preventing the progression of symptoms. | Outcome Measures | Variable | Description | |---|---| | Berlin Emotional Responses to Risk Instrument (BERRI)35 | Six items on a 7-point scale. Scale scores were created by averaging scores across the measures of negative affect (BERRI-neg) and the measures of positive affect (BERRI-pos), with higher scores indicating a stronger emotional reaction to risk information. | | Symptom worry36 | “How worried would you feel about your symptoms described in the scenario above if you had them?” (4-point scale: 1 = Not at all worried to 4 = Very worried). | | Attitudes toward laparoscopy37 | Four items on a 7-point scale (1 = Not at all to 7 = Extremely). Relevant items were reverse coded, and items were averaged to create a composite score. Higher scores indicated a more favorable attitude toward laparoscopy. | | Perceived norms toward laparoscopy37 | Three items on a 7-point scale (1 = Strongly disagree to 7 = Strongly agree). Items were averaged to create a composite score, with higher scores indicating a stronger perception of normative support for laparoscopy. | | Self-efficacy toward getting a laparoscopy38 | “How confident are you that you can get a laparoscopy for the diagnosis of endometriosis?” (10-point scale: 1 = Not at all confident to 10 = Completely confident). | | Perceived source credibility25 | Six items on a 7-point scale (e.g., “The Instagram account sharing information about endometriosis is:” 1 = Untrustworthy to 7 = Trustworthy). Items were averaged to create a composite score, with higher scores indicating higher perceived credibility. | | Knowledge of endometriosis | Ten items assessing participants’ understanding of endometriosis based on information presented in both the social media post and the scenario (e.g., “How many women are affected by endometriosis?” 0 = Incorrect or 1 = Correct). An overall score was computed by summing the items, with higher scores reflecting greater knowledge. | Statistical Analysis Content Analysis Public and Patient Involvement Statement

| Conditions 1 to 4 | |||||||| |---|---|---|---|---|---|---|---|---| | 1. Personal Anecdote, Low Credibility | 2. Personal Anecdote, High Credibility | 3. Nonnarrative, Low Credibility | 4. Nonnarrative, High Credibility | ||||| | Demographic Variable | M | SD | M | SD | M | SD | M | SD | | Age (y) | 33.66 | 7.26 | 33.41 | 6.95 | 32.72 | 7.48 | 33.28 | 7.32 | | n | % | n | % | n | % | n | % | | | Highest level of education | |||||||| | Less than year 12 or equivalent | 31 | 8.5 | 23 | 6.2 | 10 | 2.7 | 40 | 11.0 | | Completed year 12 or equivalent | 54 | 14.8 | 69 | 18.6 | 70 | 18.8 | 78 | 21.5 | | Trade, technical certificate, or diploma | 108 | 29.5 | 96 | 25.9 | 121 | 32.4 | 91 | 25.1 | | University degree | 132 | 36.1 | 131 | 35.3 | 122 | 32.7 | 112 | 30.9 | | Postgraduate/higher degree | 41 | 11.2 | 52 | 14.0 | 50 | 13.4 | 42 | 11.6 | | Language at home | |||||||| | English | 337 | 92.1 | 337 | 90.8 | 351 | 94.1 | 338 | 93.1 | | Other | 29 | 7.9 | 34 | 9.2 | 22 | 5.9 | 25 | 6.9 | | How well do you speak English? | |||||||| | Very well | 321 | 87.7 | 319 | 86.0 | 340 | 91.2 | 322 | 88.7 | | Well | 42 | 11.5 | 50 | 13.5 | 30 | 8.0 | 41 | 11.3 | | Not well | 3 | 0.8 | 2 | 0.5 | 3 | 0.8 | 0 | 0.0 | | Aboriginal or Torres Strait Islander origin | |||||||| | Yes | 28 | 7.7 | 29 | 7.8 | 24 | 6.4 | 29 | 8.0 | | No | 334 | 91.3 | 340 | 91.6 | 348 | 93.3 | 331 | 91.2 | | Prefer not to say | 4 | 1.1 | 2 | 0.5 | 1 | 0.3 | 3 | 0.8 | | Previously diagnosed health conditions | |||||||| | Polycystic ovary syndrome | 52 | 14.2 | 63 | 17.0 | 42 | 11.3 | 59 | 16.3 | | Uterine fibroids | 14 | 3.8 | 20 | 5.4 | 11 | 2.9 | 12 | 3.3 | | Adenomyosis | 7 | 1.9 | 4 | 1.1 | 10 | 2.7 | 5 | 1.4 | | Cancer | 10 | 2.7 | 10 | 2.7 | 4 | 1.1 | 10 | 2.8 | | None | 283 | 77.3 | 274 | 73.9 | 306 | 82.0 | 277 | 76.3 | | Seen a doctor for painful periods | |||||||| | Yes | 188 | 51.4 | 201 | 54.2 | 182 | 48.8 | 191 | 52.6 | | No | 178 | 48.6 | 170 | 45.8 | 191 | 51.2 | 172 | 47.4 | | Frequency of social media for health | |||||||| | Daily | 73 | 19.9 | 61 | 16.4 | 66 | 17.7 | 68 | 18.7 | | Once a week | 73 | 19.9 | 91 | 24.5 | 88 | 23.6 | 82 | 22.6 | | Once a month | 67 | 18.3 | 70 | 18.9 | 62 | 16.6 | 75 | 20.7 | | Less than once a month | 61 | 16.7 | 64 | 17.3 | 62 | 16.6 | 55 | 15.2 | | Never | 92 | 25.1 | 85 | 22.9 | 95 | 25.3 | 83 | 22.9 | | Difficulties communicating symptoms to health professional | |||||||| | Yes | 207 | 56.6 | 199 | 53.6 | 219 | 58.7 | 226 | 62.3 | | No | 159 | 43.4 | 172 | 46.4 | 154 | 41.3 | 137 | 37.7 | | Disbelieved by health professional | |||||||| | Yes | 214 | 58.5 | 208 | 56.1 | 206 | 55.2 | 217 | 59.8 | | No | 152 | 41.5 | 163 | 43.9 | 167 | 44.8 | 146 | 40.2 | | Medical Minimizer Maximizer Scale | |||||||| | Lean toward waiting and seeing | 224 | 61.3 | 231 | 62.2 | 246 | 66.0 | 237 | 65.3 | | Lean toward taking action | 142 | 38.9 | 140 | 37.7 | 127 | 34.1 | 126 | 34.7 | Intention to get a Laparoscopy | Conditions 1 to 4 | |||||||| |---|---|---|---|---|---|---|---|---| | Outcome Measures | 1. Personal Anecdote, Low Credibility (n = 366) | 2. Personal Anecdote, High Credibility (n = 371) | 3. Nonnarrative, Low Credibility (n = 373) | 4. Nonnarrative, High Credibility (n =363) | |||| | M | SD | M | SD | M | SD | M | SD | | | Intention (time 1)a | 4.72 | 1.73 | 4.75 | 1.65 | 4.46 | 1.75 | 4.58 | 1.71 | | Intention (time 2)b | 4.37 | 1.78 | 4.41 | 1.63 | 4.36 | 1.70 | 4.23 | 1.73 | | Attitudes | 4.73 | 1.12 | 4.75 | 1.11 | 4.58 | 1.16 | 4.65 | 1.16 | | Beneficial | 4.99 | 1.57 | 5.05 | 1.50 | 4.82 | 1.53 | 4.80 | 1.54 | | Harmful | 4.19 | 1.49 | 4.09 | 1.57 | 4.08 | 1.48 | 4.09 | 1.57 | | Useful | 5.02 | 1.44 | 5.08 | 1.39 | 4.79 | 1.48 | 5.02 | 1.49 | | Necessary | 4.73 | 1.49 | 4.79 | 1.51 | 4.62 | 1.54 | 4.71 | 1.59 | | Perceived norms | 5.07 | 1.23 | 5.08 | 1.22 | 4.98 | 1.16 | 5.02 | 1.26 | | Self-efficacy | 5.99 | 2.42 | 6.20 | 2.36 | 6.01 | 2.50 | 6.08 | 2.51 | | Perceived source credibility | 4.95 | 1.19 | 5.22 | 1.13 | 4.81 | 1.19 | 5.14 | 1.19 | | BERRI (positive) | 5.04 | 1.39 | 5.00 | 1.45 | 4.68 | 1.56 | 4.71 | 1.48 | | Assured | 5.07 | 1.24 | 5.01 | 1.36 | 4.76 | 1.52 | 4.82 | 1.40 | | Hopeful | 5.25 | 2.08 | 5.24 | 2.05 | 4.85 | 2.17 | 4.82 | 2.15 | | Relieved | 4.80 | 1.41 | 4.77 | 1.48 | 4.44 | 1.54 | 4.48 | 1.52 | | BERRI (negative) | 4.04 | 1.54 | 4.10 | 1.62 | 4.21 | 1.47 | 4.42 | 1.40 | | Anxious | 3.76 | 1.61 | 3.80 | 1.75 | 3.76 | 1.60 | 3.42 | 1.55 | | Afraid | 4.11 | 1.72 | 4.03 | 1.76 | 3.88 | 1.65 | 3.74 | 1.54 | | Worried | 4.01 | 1.71 | 3.86 | 1.72 | 3.73 | 1.60 | 3.58 | 1.53 | | Symptom worry | 2.82 | 0.84 | 2.93 | 0.81 | 2.83 | 0.86 | 2.87 | 0.77 | | Knowledge | 6.90 | 2.38 | 6.62 | 2.50 | 6.71 | 2.39 | 6.46 | 2.53 | | Code | Example Quote | n (%) | |---|---|---| | Positive intention | || | To get a definitive diagnosis/peace of mind | “I would want to be sure what’s going on.” | 256 (17.4%) | | To reduce pain/improve quality of life/daily functioning | “If I was in a lot of pain and it was impacting my life, I would want a resolution.” | 184 (12.5%) | | I think it’s important/I take my health seriously | “Health is extremely important.” | 113 (7.7%) | | To guide treatment/make informed treatment decisions | “If it means a step towards getting the right treatment then it is worth doing.” | 70 (4.8%) | | Trust in doctor | “I trust in health care professionals and their opinions.” | 28 (1.9%) | | Benefits outweigh the risks and costs | “It seems worthwhile for the amount of pain experienced, even if it wasn’t permanent.” | 28 (1.9%) | | To stop symptoms or condition from getting worse | “I would highly consider it if it meant it would reduce chances of long-term issues.” | 27 (1.8%) | | To maintain fertility | “Would consider it as I wouldn’t want it to impact my fertility.” | 12 (0.8%) | | Personal experience where it was effective | “I have previously had one to try and investigate my period pain.” | 10 (0.7%) | | To avoid long-term use of pain medication | “Better than nothing or relying on pain medication forever.” | 7 (0.5%) | | Negative intention | || | Cost/too expensive | “I can’t afford the cost.” | 279 (18.9%) | | Temporary benefit/not effective/not worth it | “It’s only a short-term fix.” | 128 (8.7%) | | Fear/risks of surgery/too invasive | “I don’t want to have such an invasive procedure.” | 122 (8.3%) | | Would want to seek more information/second opinion | “I would need more information before committing to surgery.” | 63 (4.3%) | | I don’t think it’s needed/not relevant to my situation | “I don’t feel that I need one.” | 55 (3.7%) | | Time-consuming/too much effort/long wait times | “Would depend if I have the time.” | 24 (1.6%) | | Preference for alternative treatments | “I would first see a naturopath or seek other alternative medicine paths.” | 19 (1.3%) | | Personal experience where it wasn’t effective | “I had a laparoscopy last year and will hold off having another one until necessary.” | 6 (0.4%) | | Would require time off work | “Likely it would require time off work for both the surgery and recovery.” | 2 (0.1%) | | Neutral intention | || | No comment/unclear | “No comment.” | 196 (13.3%) | | I don’t know/not sure | “I’m not sure.” | 49 (3.3%) | | Not sure if benefits outweigh cost | “Is it worth the wait time and money—not too sure.” | 35 (2.4%) | | Depends on how severe and persistent the pain was | “Depends on the severity and how bearable the pain discomfort is.” | 22 (1.5%) | | Depends if covered by health insurance | “It would depend if it was covered by health insurance.” | 6 (0.4%) | | Feel neutral | “I feel neutral about it.” | 5 (0.3%) | Change in Intention Attitudes Perceived Norms Self-Efficacy Perceived Source Credibility Psychosocial Outcomes Knowledge

Strengths and Limitations Implications Acknowledgments Ethical Considerations Consent to Participate Competing Interests ORCID iDs Data availability statement

Supplementary Material Please find the following supplemental material available below. For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with. For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article. Cite Cite Cite Download to reference manager If you have citation software installed, you can download citation data to the citation manager of your choice Information, rights and permissions Information Published In

Data availability statement Authors Author Contributions Metrics and citations Metrics Publication usage* Total views and downloads: 271 *Publication usage tracking started in December 2016 Publications citing this one Receive email alerts when this publication is cited Web of Science: 0 Crossref: There are no citing articles to show. Figures and tables Figures & Media Tables View Options View options PDF/EPUB View PDF/EPUBAccess options If you have access to journal content via a personal subscription, university, library, employer or society, select from the options below: loading institutional access options SMDM members can access this journal content using society membership credentials. SMDM members can access this journal content using society membership credentials. Alternatively, view purchase options below: Purchase 24 hour online access to view and download content. Access journal content via a DeepDyve subscription or find out more about this option.